Considering Colostomy for IBS - Need Advice

Hello everyone.

I'm trying to cut an extremely long 7-year story short, so if you need to ask any questions, feel free.

Anyway, I have had progressively worse IBS C/D for around 8 years now, and I have spent almost the entire of those 8 years trying to find ways to stop it from getting in the way of me having a normal life, but so far, nothing has worked.

Now when I say I have been trying for 8 years, I mean with GPs, Gastroenterologists, and IBS sufferers through forums on the internet to no avail, and my treatments have ranged from colestyramine, lactulose, down to peppermint, CBT, and bio-feedback. After all this time, the team leader of the Gastro team in my local hospital (Amersham/Wycombe) has said explicitly that she can think of no other treatments for me. However, when I mentioned that other IBS sufferers who hadn't responded to treatment had gotten a colostomy performed and it improved their lives greatly, her comments were "No surgeon in the UK will perform a colostomy for IBS," "Any surgeon who does is unethical," and finally, "It will make your life worse".

Now, after doing a little research on the internet about IBS sufferers who have had ostomies, I managed to find quite a few who were in the position I am currently in and who managed to have the surgery performed and have never regretted it. But firstly, I am wondering if anyone here on these forums has had their ostomies because of IBS. Why they had it performed, and how their lives have been since they had it performed, and also if I have your permission to show my Gastroenterologist your comments.

The reason why I am doing this is because apart from the aforementioned comments the team leader made, she was also very rude, accused me of being close-minded to non-surgical procedures even though I said a few times I am willing to try anything to avoid surgery but surgery "should" be an option if all else fails, and virtually laughed at me when I mentioned a colostomy to begin with. This led me to make a complaint about the way I was treated to the local NHS Trust, and they have since come back to me basically whitewashing everything she said with a half-arsed apology thrown in somewhere at the end.

My IBS has ruled my life for 8 years. I have lost 3 jobs, 3 long-term partners, and missed out on a lot of happy memories because of it. The only way I can even make sure to actually be able to make any predetermined appointments like hospital appointments is if I take Loperamide the night before and then in the morning, which of course leads me to have an even more severe attack a day or two later. I've done a lot of research on living with a stoma, and while I will never know exactly what it is like and what a person goes through living with a stoma, I do feel that this is the final option for me to lead a normal life.

Now I am stuck in a situation where I can either carry on fighting the system through email by complaining to the regional complaints people (can't remember their exact name right now) or by traveling a long distance to garner a second opinion, which itself is less simple than it sounds. When someone has an appointment, the most they worry about is getting there on time. For me, an appointment means a whole week of anxiety that the Loperamide may not work this time or I may have an attack before I leave and not have enough time for it to subside and miss my appointment. I told the Gastro this, but she still thought her only option was to send me to the center of London to see an IBS researcher, a journey she knows I can't take.

This has been a whole big mess. She tells me there is nothing she can do for me, but a colostomy isn't an option. Even in the NICE guidelines on IBS, it states that in a small proportion of IBS sufferers (2%) that don't respond to treatment, surgery is an option, but it is her "personal" opinion that living with a stoma is a nightmare only inflicted on those that "must" have it.

I would love to hear everyone's thoughts on this whole situation, and I am a very open question, so feel free to ask any questions.

Ricky.

Hi CrimsonKnight - I'm sorry no one has responded to your post! I do not personally know anyone with an ostomy for IBS, but here in the US ostomies are used quite frequently as a temporary measure when the colon needs to heal for whatever reason (often diverticuli). After many months or a year, it is reversed - no big deal. (I've had a reversal myself for a temp, then 5 years later had a permanent colostomy as I developed toxic mega-colon. I'm all messed up in that whole region due to radiation therapy for cancer).

I don't see how your situation could be any worse than it already is. I tried all the "alternative medicine" prior to my 2nd colostomy and none worked.

If you had an ostomy it is entirely possible your bowel movements could become regular - as mine did with my 1st colostomy - 6 AM, noon, 6PM practically on the dot! I haven't tried to become regular with this colostomy because from early on I knew I was going to irrigate it in the AM and get it all over with for the day.

Feel free to show this to your GI doc. Also it might help to get an ostomy nurse (WOCN or ET) on your side to help advocate for you. Best wishes to you! Pinky

Hi Ricky.  I agree with Pinky and will add my two cents.  Don't know what the US-UK conversion is but here are my thoughts.  We need to stop thinking of an ostomy as a horrific, terminal sentence to be avoided at all costs.  It's a CURE and not a curse.  Is an ostomy life changing?  Sure.  So are false teeth but who would live with a mouth full of abscesses?  I'm not trying to minimize the physical or psychological effects of this surgery but how does one equate pain with the absence of pain.  I think the psychological traumas are significantly attributable to the mythology associated with "the bag", etc.  I know a little about the fear of being away from a bathroom, the inability to travel and some of the other things associated with conditions like yours.  Many folks just started living again after their ostomy surgeries.  Many wish they had them done sooner.  Our perception of the whole ostomy thing is wrong and I think we need to educate the medical professionals that living without pain, having the ability to work, play, love and be happy is what we need their help for.  If an ostomy will accomplish that, why "experiment" forever at our expense?

Good luck and please feel free to share my thoughts.

Sincerely,

Mike

Hi Ricky. I am going to jump in since it sounds like you need some support. First of all, you need to complain vociferously about this very uncaring and ignorant nurse you are dealing with. You must demand someone else. It is an offense to all ostomates to suggest that living with "a bag" is somehow horrible. It is not. For many of us, myself included, it is a blessing truly. Without it, I would have died a horrible death already, and I am very happy to still be alive. Let me assure you that living with a pouch will not destroy your life or your self-esteem unless you allow the ignorant opinions of others to rule your life and your thinking. I have a dear friend who suffers miserably from IBS, and when I suggested to her that a colostomy might be the answer to her problems, she immediately said she would kill herself before agreeing to that. I find this thinking very odd because only in the beginning of my experience with a colostomy did I find it necessary to carry around an extra outfit of clothes and needed to know exactly where the bathroom was everywhere I went. That has passed. Yes, living with a colostomy takes some getting used to, but it's better than having your bowels rule your life and dictate your every move! I am pretty sure there are people from the U.K. on this site who have colostomies due to IBS. It is not uncommon in the U.S. Only an irresponsible and ignorant person would tell you that it is impossible. Keep looking around on this site and posting your questions, and eventually, you will meet some people who can help you. The anxiety you deal with on a regular basis due to your IBS could be relieved with an ostomy. Hang in there and don't let the small minds get you down. Keep complaining and find some caregivers who are willing to truly help you. Take care.

P.S. You may show my response to your GI.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Ricky, my surgery was 22 years ago. It has been an adventure since, but as I said to my friend with bladder cancer (who was avoiding the surgery), "Which side of the grass do you prefer?"

If not for the surgery, subsequent care/support, and the ostomy appliance... I would never have seen my 3 grandchildren.

FYI - the Ostomy newsletter which I read has numerous ostomates with IBD who felt their lives were changed once the ostomy was done. I'd seriously consider connecting with your local ostomy association for support.

If I were you, I'd find another doctor!!

Hi! I have just posted about this as I've been diagnosed lactose intolerant and IBS. This has become my last resort and there's a high chance they're going to say no as it doesn't class as "bad enough" which is ridiculous! I haven't suffered as long as you have, sorry to hear it's been so long! :( But I feel, as you do, that this is the way forward. Have you been tested for anything other than IBS? The specialist at our local hospital discharged me as healthy when I'd told him how bad things had gotten and asked my GP to refer me elsewhere as that couldn't be it. It's a lot easier when people are experiencing what you are going through, whereas most doctors just know about it from patients and are still quite ignorant towards it.

Fingers crossed for you that you can get one and it'll make your life so much better as most of the stories on here, they seem to be very successful. :)

Hi Lo2644.

I was diagnosed with lactose intolerance in my late 20's and IBS (they called it spastic colon back then) in my early 20's. I don't know how bad things are with you because you really don't say in your post. But I would have never gotten this surgery because of being lactose intolerant or IBS. I experimented with food to see what I could and could not eat to keep my problems tolerable. I ended up with my colostomy at the age of 57 because of cancer. I would have never wanted to have this at an early age. I wish I didn't have to have it now. I'm learning to live with it. I believe the original poster of this topic also said he had Crohn's Disease (C/D). That's a whole different animal than IBS or intolerance. I could be wrong, but I believe if you have Crohn's you have to have an ileostomy. It's different than a colostomy. A high percentage of the people on this site have Crohn's and they all feel the ostomy saved their lives and gave them a better life. It's not always a good thing. Some have traded one problem for another.

Like I said, if all you have is IBS and lactose intolerance - I would look into every other way there is before pushing for an ostomy. Herbs, medicine, hypnosis, marijuana, acupuncture, voodoo dolls (yes, I'm being my normal smartass self) but this surgery is not a piece of cake and it doesn't always turn out the way it seems you are thinking.

It's your choice, obviously. But you should do a lot more research on the good and bad of it before you move to another world (being sarcastic again) to get what you believe will help. I am not trying to devalue your problem. But unless there is more going on that you didn't post, I have to agree with the doctors.

My two cents. I'm hoping people with your specific problem weigh-in. I have not seen anything on the site about IBS unless it came along with other disease/diagnosis.

Hello! I'm new to the forum. This is my first post! I see that this topic was started nearly 2 years ago, but if crimsonknight3 is still around on the forum, I was just wondering if he got his surgery and how he was doing now, as I have a very similar story. I too have spent several years basically living in the toilet battling with enemas and suppositories thanks to IBS, chronic slow transit issues, and anismus. I can't pass a stool "the natural way" at all and as I also have CFS/ME, it's wearing me out! So I too am now looking at a colostomy. I have an appointment with a colorectal surgeon in October and hope to discuss it with them, but I don't know if they'll "go for it". One doctor I talked to about it was horrified as "I'm only 45 and it's terribly disfiguring" - an attitude I found both very silly and insulting. Another doctor at my GP practice was much more supportive and is writing to the colorectal surgeons about it on my behalf. We shall see!

Is there anybody else here with similar issues to me? If you feel able to share, I'd love to hear from you!

Mandy

Mandy,

My surgery was under emergency conditions at 39 y.o. As such, I did not face the choice that you have in front of you but I can tell you that I was sick for 10 years before surgery. I recall how miserable I felt. If a colostomy will fix your condition, I personally wouldn't hesitate to have the surgery. There's a lengthy recovery period but afterwards, you'll begin to lead a somewhat normal life again and hopefully you will feel healthy again. It's nice to be able to eat without feeling sick. I wish you luck.

r/Mark

Thanks, Mark. So sorry you went through all that but glad you're doing well now! I honestly don't know if an ostomy will cure me - I'm weighing up the pros & cons. I don't even know if my surgeon will go for it (although my doctor is supportive and has written to him). I just can't think of anything else to do at this stage - can't face spending the rest of my life in the bathroom, attached to an enema! :-/ I'm hoping that an ostomy will at least allow me to leave the house - I'm more than happy to live with it if I can get at least some of my life back!

Mandy

Mandy,

Thanks. Many others on this website have gone through it. Many of us know what you're going through. While suffering from UC, it often felt like my insides wanted to fall out and the pain was constant. It seems that your docs should be able to definitively advise you whether having the surgery will help or not. It almost sounds like they're looking to you to advise them? If they cannot, I'd recommend other doctors' opinions. This would be wise regardless. Personally, I could not foresee that it would hurt your condition, but you certainly need to be sure what to expect if you go through the trouble. Keep us posted on what you learn.

Mark

Thanks Mark! Apologies for my late reply. I do have some hopeful news! I've just had a letter from the colorectal surgery consultant saying that he's heard from my GP & the bowel nurses about my ongoing problems and wants to see me on the 28th September to "discuss a way forward". Fingers crossed that this is some light at the end of the tunnel! Don't want to get my hopes up!

Mandy

Hello all! I had my appointment with the colorectal surgeon, and it went very well. He recommends a choice of 2 options - an ileostomy or sacral nerve stimulation. A very difficult decision! SNS will take a long time to organize - they have to apply for funding, then I have to undergo a trial lasting 2-3 weeks. If successful, I then have to join the waiting list for a permanent pacemaker! Now, apart from the long wait (which I don't fancy as I'm near the end of my tether using multiple enemas and suppositories!), the success rate is only 50% - not great odds IMHO! The ileostomy has a better success rate and can be done more quickly, although obviously it will be harder to manage long-term than the SNS pacemaker!

So - a decision awaits me! Any advice would be more gratefully received! At least they are doing something! I'm happy to live with an ileo if it gets me out of the bathroom!

Mandy

Mandy,

Thanks for providing an update. I think there are many factors involved with this decision; general quality of life (QOL) being the largest and most broad. What would the expected QOL be for each method? For example, SNS has only a 50% chance of success, but how much better would your QOL be if it actually succeeds? So, would it be worth being sick for a longer period of time to see if this method works for your case?

You also have to factor in your age. At 45, you have many active years ahead. SMS sounds like it's less maintenance, which should provide for greater freedom.

Other important considerations are the common problems those with ostomies face; things like social withdrawal, possible nerve damage, depression, problems with intimacy, and even failed relationships. I'd recommend reading some of the many academic studies done on those with ostomies as well as SMS. Try to compare average QOL for each method, and consider success rates versus risk/reward.

Well, those are a few thoughts I had. I'm sure others have even more ideas. Hopefully, we can help you work through the decision together.

Take care.

Thanks Mark, for your kind & detailed reply. I think I forgot to mention that I have other health issues too - CFS/ME and osteoporosis being but two, so whatever surgery I have I'll never get back to "normal", alas! At the moment I'm having to use multiple enemas & suppositories to "go", and I'm worried about not being able to do that for much longer - it probably isn't safe. So staying as I am is no option. I've just read a scary story about a lady who had SNS & it damaged the nerves in her legs, meaning she couldn't walk properly! Other people have complained that it's actually quite painful for a long time, and it's difficult to get the level of stimulation right! So both ops have their pros & cons! I'm so glad I found this site where I can share this stuff!

Mandy